I’m writing to you because it’s so much more personal than a blog post, and the diagnosis your received last week is as personal as it gets. Alzheimer’s. I bet you’re still in a fog, trying to assimilate what this means for the rest of your life.
Can I give you some advice? (You know me, I’m going to give it anyway. Why do I even ask?) Just breathe. Give your self as much time as you need to think and pray and grieve. Yes, grieve. You are facing losses and a different life than you imagined. Give yourself time to grieve.
But don’t stay there. At some point, you need to square your shoulders and say, “What will my life look like now?” and “How do I want it to look?” You get to decide at least some of that, you know.
Things to give up
As we age, we all bump up against experiences we will never have again. I remember the day I realized I would never nurse another baby. This wonderful, nurturing experience had been a part of my life for the past 10 years, but when my last baby left it behind that season ended. It hurt, and I cried some private tears. (There’s that grieving again.) But soon I happily moved into the next season with my children.
There will be areas of your life which will change with this diagnosis. Some change may be immediate, and some you might need to grow into. From what I’ve seen, as difficult as it might be, making your own decisions about what to give up and when is the best way to go. It gives you power. You are in control.
Take driving, for example. That’s a big one. It’s your independence, and life is not only complicated but humiliating without a vehicle. You ask for rides and feel like a burden. Your natural inclination is to hang on as long as possible, even though you notice your responses getting sluggish, and you’re afraid of anything but the most familiar routes. Then one day, your son comes over and sits you down to talk about your driving, or the doctor revokes your licence. It’s humiliating. Why not take control and make the decision yourself? Impress the socks off your family by learning how to use Uber, and voila–you’re independent again,
What other decisions might land in the “give up” pile? Perhaps, once you get over the fear of living somewhere different, you would enjoy the freedom of a smaller place. Maybe the lonliness you struggle with could be dealt with through living in community.
After you get over the initial shock, spend some time looking at how you’d like to live your life. Are there decisions you could make which would give you control, and a life that looks more like what you’d like?
Things to decide
While you’re on a roll of taking control, there’s a lot of decisions you need to make. You’re a smart lady, so you may have already thought of some of these, but let’s look at them anyway.
- a will–you probably have one, but does it need to be updated? Pull it out of it’s file folder and have a look. Maybe you’ve added three grandchildren to your family since it was written.
- powers of attorney–You’ll need a POA of care who will make decisions about your care when you can’t, and a POA of finance who will look after your money. If you have more than one person, should they be able to each make decisions, or do they all have to agree before a decision is made?
- Grab yourself a big mug of tea and go sit on the porch swing. You have some thinking to do. When the day comes when you can’t live alone, where would you like to live? I don’t mean a specific place, because that’s a lot to figure out. But what would you like it to be like? How would you like to be treated? What’s important to you?
- This is hard to think about, but how would you like the end of your life to go? Have you signed a DNR form?(https://annpeachman.blogspot.com/2018/06/care-partner-wednesday-if-my-heart.html) If you can no longer swallow, do you want to be tube fed? (https://annpeachman.blogspot.com/2018/06/care-partner-wednesday-comfort-feeding.html) Write down what you do and don’t want, then gather your kids and have a talk. It’s not easy to do, but it’s a gift to them.
You can’t do this alone! Your family loves you and will be there for you, although they will have lots to learn along the way. But what about friends? You’re going to need those who can listen and visit and be there when you just need a cup of tea and a chat. Think about who those friends are, and chat with them. Let them know what you are facing and what kinds of care would mean a lot to you.
Look for others, too. The Alzheimer Society has all kinds of wonderful resources, and you may find new friends there.
You still have so much to give, my dear. Alzheimer’s is scary, but you can live a full and fulfilled life. Especially with a little planning. And while you’re gathering your tribe, make sure I’m on the list.
Your friend,
Ann
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Care Partner Wednesday–How To Begin Your Alzheimer’s Journey in 3 (Not So) Easy Steps